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Home-based programme empowering parents of children with Down syndrome

20 October 2025 | Story Andre Damons | Photo Supplied

As South Africa marks Down Syndrome Awareness Day on 20 October, it is worth pausing to celebrate the incredible children who light up our lives and the parents who walk this journey with them. Down Syndrome is the most common chromosomal disorder, causing intellectual disability.

According to Down Syndrome South Africa, one in every 600 babies born in developing countries has Down syndrome. Data on the prevalence in South Africa remain limited, however, earlier estimates suggest about one in every 770 births. Although Down syndrome is not curable, children with the condition have many abilities and strengths. It is, therefore, vital that families engage in interventions that help children reach their full developmental potential.

Dr Olive Khaliq, Senior Lecturer in the Department of Paediatrics and Child Health at the University of the Free State (UFS), says most interventions rightly focus on the child, but there is growing recognition that parents are just as central to their children's progress. The home is the first and most consistent environment where development occurs. Parenting a child with Down syndrome can, however, be influenced by the social context.

Empowering programme

“In South Africa, cultural beliefs and community attitudes often shape how families cope and seek support. Some parents fear disclosing the child's disability due to fear of being judged or the long-standing myth that Down syndrome is a curse or a punishment.

“This can lead to isolation or delays in accessing interventions that could make a difference. Empowering parents with knowledge and practical tools are therefore essential, not only for their children's development, but also for their own well-being,” she says.

A remarkable example of such empowerment is the Developmental Resource Stimulation Programme (DRSP), a home-based programme designed by Dr Dorothy Russell from the Department of Paediatrics and Child Health. The DRSP, designed for children with Down syndrome from birth to 42 months, combines structured play and guided parent-child interaction, helping parents to stimulate their child's cognitive, fine-motor, gross motor, and language development using everyday household items such as teaspoons, tumblers, and face cloths. Previous quantitative research shows that children whose parents participated in the programme made measurable developmental gains.

Feedback from parents

In 2024, Drs Khaliq and Russell, together with Prof Gladys Kigozi-Male, Associate Professor in the UFS Centre for Health Systems Research and Development, received an interdisciplinary grant from the UFS to explore the experiences of parents regarding the DRSP. They engaged 31 parents of children with Down syndrome in individual interviews and focus group discussions. According to Kigozi-Male, findings revealed overwhelmingly positive experiences. Parents reported feeling more capable and more connected with their children. “One parent shared: ‘It [the DRSP] helped me to become closer to her, and to know her better, and to know what she’s capable of … my child can do anything that we wanted her to do … she’s capable of everything, and that if we follow this programme, she [will] become very strong and capable,” said Prof Kigozi-Male.

Another parent reflected on the knowledge gained: “… the knowledge that I didn’t have before … as a mother of a Down syndrome baby – but for any mother … I have learned so much, and it is what any mother should know …” Parents also noted visible improvements in their children’s development, particularly in muscle strength, crawling and walking with one parent explaining “It really changed a lot … my child's neck was not okay, so the programme taught us how to train the neck muscle. Even when they started walking or crawling, it really helped a lot …”

Another parent highlighted how the programme strengthened their confidence as caregivers saying “… I don't think we would have come this far without the programme because it helped us understand my child … Without the programme I don't think he would have been so strong because we wouldn't have known how to help him ...”

The DRSP, explains Dr Russell, is just one example of what can happen when parents are treated as active partners rather than passive recipients of care. Going forward, it is important that parents' voices continue to shape how interventions are designed and delivered. Their lived experiences are powerful sources of knowledge on what works in real settings.

“As we commemorate Down Syndrome Awareness Day, let's remember that inclusion begins with understanding, and understanding grows when we listen to families, parents, and children who remind us that every life matters,” concluded Dr Khaliq.

News Archive

UFS awards honorary doctorate to global peace ambassador Dr Lakhdar Brahimi

2015-07-07

Professor Heidi Hudson, Director of the Centre for Africa Studies at the UFS and Dr Lakhdar Brahimi.
Photo: Mike Rose from Mike Rose Photography

The Faculty of the Humanities and Centre for Africa Studies rewarded the contributions of Dr Lakhdar Brahimi, a prominent global peace leader, with an honorary doctorate on Thursday 2 July 2015.

The conferment formed one of the highlights of the 2015 Winter Graduations. Dr Brahimi’s work as a United Nations’ (UN) envoy, and African peace leader of note, was deeply respected by the university. Professor Heidi Hudson, Director of the Centre for Africa Studies at the UFS, accepted the PhD on his behalf.

In his acceptance speech, read by Prof Hudson at the Chancellor’s Dinner the same evening, Dr Brahimi expressed his gratitude to the university. “I deeply appreciate your generous recognition, and even now, in the twilight years of my life, I shall try to be worthy of your confidence in everything I say or do.”

“My generation did its share: its successes and its failures are things of the past. We must accept to be judged by you, the graduates. You, the young graduates here at the University of the Free State, and your fellow members of the African intellectual elite, have an exciting opportunity to take on the challenges and fulfil the dreams you have. We must accept to be judged by you.”

Algerian-born Dr Brahimi was first involved with the UN in 1992 as rapporteur to the Earth Summit. Distinctively, he is the most-frequently appointed special envoy of the UN. Amongst many other countries, he has worked as a mediator for South Africa, Haiti, Afghanistan, Iraq, Syria, Democratic Republic of Congo, Cameroon, Burundi, Angola, Liberia, Nigeria, Sudan, and Côte d’Ivoire on behalf of the UN.

Significant peacekeeping efforts in South Africa (1993- 1994)

The ambassador– in his capacity as special representative to South Africa from December 1993 to June 1994 –played a direct role in South Africa’s democratic transition.

Prof Hudson expressed appreciation for the ambassador’s role in facilitating a peaceful transition from South Africa’s Nationalist government into the current democratic dispensation.

“One of the reasons we selected him as recipient of the honorary doctorate, is because of what he did for the African continent,” she said.

In addition, she commented Dr Brahimi for being a living testament of Ubuntu. “He has displayed an ethic of humanism in everything that he has done, in the way that he has mediated in certain conflicts - his main contribution is as a mediator.

According to Hudson, his humility, modesty, and generosity are the epitome of Ubuntu which states that “I am because we are.”

Dr Brahimi as a global peace practitioner

Dr Brahimi served as Undersecretary-General of the Arab League, Arab League Special Envoy for Lebanon, and Foreign Minister of Algeria.

The UN Peace-building Commission was established as a result of recommendations in his2000 Report of the Panel on United Nations Peace Operations (Brahimi Report).

Since 2007, Dr Brahimi has been a member in The Elders - an alliance chaired by Kofi Annan -of peace and human rights advocates including Desmond Tutu, Graça Machel, Mary Robinson, and Jimmy Carter. His passion for justice led to his membership in the Commission on Legal Empowerment of the Poor.

In 2010, he was Laureate of the Special Jury Prize for Conflict Prevention, awarded by the Chirac Foundation (France), which promotes international peace and security.

Dr Brahimi’s influence in Peace Education

The Brahimi Report has had an indelible impact on scholars specialising in the broad field of peace operations. Dr Brahimi’s writings have also contributed to knowledge on post-conflict reconstruction and development (PCRD), a signification part of the African Union’s narrative.

He is a distinguished senior fellow at the Centre for the Study of Global Governance at the London School of Economics. He has taught a postgraduate course on Conflict Resolution at Sciences Po, Paris (2011); is Andrew D. White Professor-at-Large at Cornell University; and is affiliated to the Institute for Advanced Studies at Princeton, where he was a visiting professor from 2006 to 2008.

In addition, Dr Brahimi is a founding member of the French-language Journal of Palestine Studies, and a board member of the Stockholm International Peace Research Institute.

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